Posted by: bibmomma | September 19, 2014

The Move is OVER and Other Exciting News!

Little House

Downsizing

The move is finished! We are officially downsized…an interesting concept and by far one of the most challenging activities I’ve ever finished. In less than a month we sold our home of ~16 years, found a new home, sold furniture, gave away “stuff” and managed to pack, move, unpack and hang pictures.

If you think you are EVER going to downsize, now is the time to get started going through your closets, drawers and garage. Don’t wait until the time you sell your home…it’s too exhausting to get it all done. My hubby says my new garage looks like an Amazon warehouse with all of the boxes. I still have things that belong to family members and I’m waiting on them to come and get it.

The most challenging part of this experience was packing fragile things. Fortunately I didn’t break very many things – and I’ve adopted the attitude that it’s all “stuff” anyway. It’s actually very liberating to have less to take care of, dust and manage. The tremors did give me a good challenge and I had to pay attention to everything I placed in boxes so that I didn’t drop anything. I also found out it’s hard to carry boxes when I stumble around. I had to really be careful with that – although I did drop a big box and smushed a toe!

An exciting thing has happened! Today one of my blog posts was featured on the Michael J. Fox Foxfeed Blog. You can see it HERE. I’m humbled that they chose one of my blog posts.  But the topic is relevant.  Most people don’t notice my tremoring and stumbling like I do.  My family has actually gotten used to it all…but I notice it and the tremors are a barometer of when I need to take more meds because they are wearing off.  So, parking in that handicapped space depends on the type of day I’m having.  I’m sure some of you have stories about those experiences too.

I hope you have a great weekend!  Keep your sunny side up!

Posted by: bibmomma | July 7, 2014

A Brave Man Fights Parkinson’s Disease

I’ve been informed of a very brave man, Andy McDowell, in New Zealand who is fighting Parkinson’s Disease along with the rest of us.  Andy is 48 years old, a marketing consultant who is happily married with two beautiful, young daughters.  His story is documented in a television documentary that is quite moving.

I hope you will go to Attitude Live and see the story of Andy McDowell’s life, Full Episode:  Living with Parkinson’s.

Blessings to you all and I hope you are doing well.

Bibmomma

In a recent study published in The Lancet researchers found that newly diagnosed Parkinson’s Disease patients benefited from levadopa over newer drugs in the long-term treatment of Parkinson’s Disease.  These newer drugs are the dopamine agonists and monoamine oxidase Type B (MAO-B) inhibitors.

As reported by Health 24, this study was conducted with 1,600 newly diagnosed Parkinson’s Disease patients who were followed for up to seven years.  They were selected randomly to take either levadopa or one of the other two medications.  The study leader, Richard Gray, from the University of Oxford in England stated, “Although the differences in favour of levodopa are small, when you consider the short- and long-term benefits, side effects, quality of life for patients, and costs, the old drug levodopa is still the best initial treatment strategy for most patients.”

Over the years patients have wondered if it is best to stick with levadopa or take one of the newer drugs.  This long-term study helps to alleviate some of the mystery surrounding the choices a PWP (person with Parkinson’s) has to make.  Even though long term use of levadopa can have side effects of  muscle spasms and movement problems, we know that dopamine agonists and MAO-B inhibitors can also have side effects of nausea, swelling, sleep problems and hallucinations.

This study gives us some better data about taking levadopa for PD.

Posted by: bibmomma | June 7, 2014

Pondering Happiness

Tonight I’m pondering happiness.  We are going to move – leave this home I’ve been in for 16 years. I don’t know where we’re going, but we’re looking for a new nest.  I know we’ll land in a fine nest – I won’t accept less.  The space will be smaller, more manageable, less yard, no pool, no pond, and less yard work.  It’s time to downsize.  It’s time to live life, to do fun things and be happy – and work less!

Today I cleaned out the cabinets in the bathroom and half of the cabinets in the kitchen.  Gosh, I had a lot of “stuff”.  I’m giving it away, throwing it away, and generally making hard decisions.  It’s time to get rid of 1/2 of my crystal, most of my antique teapots, cups and saucers and kitchen things I don’t really use.  Someone will love them and use them.  But I don’t bake like I used to, and I certainly don’t can veggies and fruits anymore.  It’s time to transform my kitchen into a smaller, more manageable space.

So, I’m pondering happiness.   This is a scary transition.  I love this place.  I love my home.  But, I’ll adapt, and I’ll make another place “home”, won’t I?

Part of this decision to move has been because I’ve decided to have DBS in the Fall/Winter.  If anything happens and I have trouble, I don’t want my sweetheart to have to face moving us by himself.  I want to be fully settled, comfortable and not worried about selling, packing and moving.  I’m sure the DBS will be fine.  The success rate of Deep Brain Stimulation is great. But, as you all know, I’m a worrier.  But I’ll make sure all of my ducks are really in a row before I have the DBS.  Otherwise, I just couldn’t face it.

So, moving has been a long-term goal.  Now it’s a reality.  Packing crystal while fighting tremors is interesting.  I don’t recommend it for the weak-of-heart.  I’ll keep you posted on my progress.

So, no matter where you are – go forth, and be happy!

A year ago I gave in and applied for a handicap parking permit.  I feel funny using it because I want to “force” myself to walk without rigidity, but that doesn’t happen.  I want to “force” myself to walk without stumbling, but that doesn’t happen either.  Like most people with Parkinson’s Disease I have good days and bad days.  So far, my driving has not been affected.  I am able to respond quickly and I really don’t drive places other than the ‘hood.  Everything like the bank, grocery, drug store and doctors are within a 2-5 mile radius of our home.

File:Handicapped Accessible sign.svg

But I still feel strange parking in the handicap places.  So, on good days, I don’t.  I park in normal spaces and walk, swinging my arms and carefully placing my feet one in front of the other.  I haven’t fallen in public in a good long time.

Today we went to eat lunch and then to a “big box store”.  I parked in the handicapped place next to the restaurant and when we finished we walked to the store.  It was good exercise, but I was jiggling and tremoring my way through the parking lot.  Perhaps I feel guilty about having this handicap designation because my neurologist was hesitant to give it to me.  He said that there were people in wheelchairs who “really” needed it more than me.  But then my physical therapist intervened and told him that when I travel, or when I’m having a bad day, I really do need it – and he relented.

I hate having to rationalize Parkinson’s Disease and my needs to people….most especially my doctor.  And I hate being stared at in a parking lot having someone wonder, “is she really handicapped?”  It makes this disease much harder to live with, much harder to deal with on a daily basis, and much harder to overcome.

Hopefully folks will realize that there are handicaps that cannot always be easily seen or recognized.  I’m just doing the best I can. Let’s just extend some grace to one another – and ourselves.

Posted by: bibmomma | May 29, 2014

Finished Hitchhiker Scarf – An Accomplishment

Knitting is relaxing. There’s no doubt about that. Once I get into the groove of the clicking needles and making my way through a pattern, I relax.  The stressful part for me is making myself sit down to actually knit. I always seem to find some chore or distraction that keeps me from knitting.  But once I get started I seem to relax.  I think my tremors fade away when I knit. I’m not sure why, but it seems that the rhythm of the needles helps me to stop tremoring – especially now that it’s in both hands.

My good friend and knitting mentor, Cindy, tells me that knitting is proven to be beneficial for our brains. In fact there is a knitting guru called “The Yarn Harlot” – Stephanie Pearl McPhee who spoke at a knitting conference and related facts about this. I figure my brain needs all the help I can get, so now that my frozen shoulder isn’t hurting so much, I’m knitting again.

Since February I’ve slowly been working on the Hitchhiker Scarf by Martina Behm. I finally finished it and it’s ready to give to my daughter on her birthday in August. So now I’m working on two more Hitchhiker scarves for each of my two nieces who have birthdays in October.

I found this pattern on Ravelry (Ravelry.com) which is a great resource for knitters and crocheters. I paid for this pattern and it was well worth it. The yarn I used was Mountain Colors Twizzle in the color way of Hollyhock. I like the “alligator toothey” pattern that is on one side of the scarf. Hopefully, these girls will like their gifts. I’m almost finished with the second one now.

image

I spent some time updating the list of Parkinson’s Disease Blogs and Parkinson’s Disease websites last night.  There were several blogs that haven’t been updated in a few years.  This makes me sad because it tells me that the bloggers aren’t doing well, or have lost interest in their need to communicate to the wider Parkinson’s community.  I understand that since I’ve struggled with health issues this last year.

However, I did also update the links for the Parkinson’s Disease websites too.  Several had just abandoned their websites and others have moved them.  So the list is now updated if you want to take a look at it.

I also added a few new blogs to the list.

Happy reading!

Partners in Parkinson’s Logo

Today a new resource launched by the Michael J. Fox Foundation.  It’s called the Partners in Parkinson’s and it gives patients, caregivers and families a resource for connecting with professionals, finding good information and getting support.

According to the Michael J. Fox Foundation newsletter the partnersinparkinsons.org is a place to connect for knowledge and support.  It will also provide:

  • The first-ever online tool to locate a movement disorder specialist (developed in collaboration with the International Parkinson and Movement Disorder Society).
  • One-on-one support from Parkinson’s Disease Advocates – social workers, counselors, and nurses who are specially trained to provide patients with the latest Parkinson’s education and resources throughout the U.S.
  • Education and empowerment events around the country – bringing patients and families together with local movement disorder specialists, allied care providers, support and activity groups, Parkinson’s policy advocacy groups, such as National Participating Partner The Parkinson’s Action Network and more.  Events will feature a full day of panel discussions about ways to live well with Parkinson’s, including an afternoon session led by National Presenting Partner The Davis Phinney Foundation.

The Partners in Parkinson’s 2014 events:

May – Cleveland

August – San Francisco and Seattle

September – Atlanta and Boston

October – Washington, D.C. and Philadelphia

November – Chicago and Denver

December – Los Angeles

 

Posted by: bibmomma | May 27, 2014

A New Pioneer in Deep Brain Stimulation

Today I read an interesting article about a pioneer who is an electrical engineer and neuroscientist.  His name is Caleb Kemere from Rice University.  Kemere has just received a five year grant from the National Science Foundation that will allow him to conduct research to redesign DBS technology.  This NSF CAREER Award is a grant that is about $400,000 in research funding that will give Kemere the chance to conduct research on the brains of mice to test out DBS technology that will operate faster.

Currently DBS patients must go to their neurologist to get their DBS adjusted.  Kemere wants to eliminate that lag time in adjustment by developing DBS technology that allows the brain to communicate in milliseconds and receive the stimulus very quickly.  As an electrical engineer he finds this type of work could be more effective for Parkinson’s patients to receive DBS treatment.

It’s wonderful to see the progress and transition that is being made for Parkinson’s patients.  If you’d like to read the whole article about Caleb Kemere and his ideas that got him the NSF CAREER Award, go to this Medical Xpress article.

Posted by: bibmomma | May 23, 2014

Deep Brain Stimulation – Electrodes in the Brain

After having Parkinson’s Disease now for 10 years I’ve always, always avoided the topic of Deep Brain Stimulation.  My Neurologist has approached this topic with me on several occasions and I’ve always told him, NO!  I had my doubts after attending a Medtronic seminar 9 years ago.  And frankly, I was scared.  I treasured my damaged brain, and I didn’t want anyone messing around in there – no matter how successful their track record was.

Deep Brain Stimulation by Medtronic

Deep Brain Stimulation by Medtronic, Inc.

Now I’ve changed my tune.  My tremors are worsening.  My legs are becoming more rigid and walking is difficult.  The frozen shoulder I’ve had the last year changed my view of “quality of life” so that I’ve come to realize that movement is a treasure.  Being able to brush my hair again has been a joy, not just a relief.  So, when I went to the Neurologist again two weeks ago, he brought up the subject.  My meds aren’t working that well and I’m really at the end of the treatment regimen now.  It’s time for me to consider DBS.  So, my husband and I went to the monthly seminar at my Neurologist’s office where DBS patients, prospective patients, the Medtronic rep and my physical therapist were in attendance.

This time the news was different.  There is a new way to deaden the scalp once the hair has been shaved.  So, when the GPS screws are put in the scalp there’s not so much pain.  Then the next day is when the actual Deep Brain Stimulation probe is inserted.  There is a new sensor type thing on the end of the drill that senses when the skull material comes to an end so that they don’t drill into the brain material.  That’s new and a relief.  A week or so later is when the battery pack is put in my abdomen and the leads are put in the body from behind my ear all the way through my chest cavity to my abdomen and hooked to the battery pack.  While that’s major surgery, it’s no different than the surgeries I’ve experienced for my spine or knees.  I can do this.  I think I’m almost ready.

There was a gentleman at the meeting who turned off his DBS and his tremors were as bad as mine.  When he turned the remote back on – his DBS worked and his tremors stopped.  I cried.  I realized I don’t need to live like this.  Deep Brain Stimulation is not a cure, but it does give me hope.

I work in an environment where I present to large groups of customers, usually over the internet, but sometimes at national trade shows.  It’s come to my attention that my senior management is not allowing me to attend these large trade shows and has opted to send some of my colleagues, from other parts of the country where it’s not necessarily so convenient for them to attend.  I asked my colleague if it’s because of my tremors and he wouldn’t answer me.  I asked him again, and he ignored me a second time.  This was all the confirmation I needed to let me know that it’s been discussed.  My tremors have been a topic of conversation, one no one dares to bring up to me (probably because I’d sue the pants off of them!).  But really, no one wants to approach me about how badly my tremors are progressing.  I get it. I understand now that if I want to continue to work and be productive in this environment, I have to make a decision to address the tremors, if I can.

Today I saw this article and it reinforces what I know from the meeting I attended.  Go here to read the article about Karen Clinkingbeard. She is from Baton Rouge, LA and this article is from WAFB – Channel 9.  It will give you some information about a person who’s life has been changed.

Deciding to have Deep Brain Stimulation is only the first step.  Now I have to be vetted my the Neurologist and the Neurosurgeon, and of course, deal with my insurance company and the financial burden of having this procedure done.  I’ll keep you posted on progress.  We all know this last year or so has been awful, and I haven’t blogged much.  I am trying to do better.  I hope you are doing well too.

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